10 Things You May Not Know About Lyme disease & a GLA Gala Recap

10.16.18

Lifestyle

Last week I had the immense privilege of attending the annual Global Lyme Alliance‘s NYC Gala… on my birthday, no less. Yes, that was a coincidence. YES, I believe it was fate — because really I believe there are no coincidences in this life.

I am not sure what the best part of the night was. Having my other half learn more about chronic Lyme from some of the top doctors, researchers, and fellow Lyme warriors out there probably topped my list. Learning about new testing requirements from the CDC made my heart sing. Being in the same room as my Lyme hero Yolanda Hadid and listening to her speak about her struggles with the disease was both deeply inspiring and heart wrenching.

Getting to reconnect with my dear friend Ava and her mom (and meet their family & friends) who I met at True North water fasting earlier this year was a major highlight. And of course snagging a photo with keynote speaker of the night Ramona Singer (yes, from RHONY!!!), whose sister has suffered from Lyme, also has to be on my list, can’t lie!! Thank god for having a fiancé who has no shame in asking celebs for photos on my behalf, as I cower in the corner watching him ask.

Another highlight was witnessing the entire cast of Real Housewives of New York filming for the show at the gala, knowing that a topic as widely unknown and misunderstood as Lyme is going to be highlighted on a majorly popular Bravo show. Not to mention being face to face with Countess Luann herself when she arrived (and hearing Ramona call her out for being late 😂 )… I mean, not to fangirl too hard, but I have been watching that show since season ONE.

HI RAMONA!

Another highlight was meeting the CEO of GLA, Scott Santarella. It fills me with overwhelming amounts of emotion to know that there are powerful people dedicating their life’s work to ending the epidemic and suffering of Lyme disease. With over 300,000 people getting diagnosed each year, and an estimate of 500,000 people contracting Lyme per year, a climate where disease-carrying bugs no longer die off in the winter, and a medical community full of many, many doctors who MOCK, misdiagnose, and greatly disservice those of us who know we are suffering… Scott’s work is truly the work of an absolute hero in my eyes. As is the work of the rest of GLA’s team, scientific advisory board, doctors, and supporters.

NEW YORK, NY – OCTOBER 11: Scott Santarella and Jordan Younger attend the Global Lyme Alliance Fourth Annual New York City Gala on October 11, 2018 in New York City. (Photo by Dave Kotinsky/Getty Images for Global Lyme Alliance)

Basically, attending the gala was a dream. My ultimate dream is to speak at the gala in the next few years (maybe next year!??! Just throwing it out there) to share my Lyme story and the decade-long battle I fought before even receiving my diagnosis this June. With incredible speakers like Yolanda, Ramona, Erin Walker (pro-golf player Jimmy Walker’s wife), and support from other powerful well-known sufferers from Lyme like Avril Lavigne & Rob Thomas + his wife Marisol, it would be an honor to follow in their footsteps and continue to raise awareness for a disease that has seemingly ripped the rug out from beneath my life for the last ten years.

Also while I was in New York I held a last-minute meet up for my TBB Tribe at Hu Kitchen a few days after the gala. I got to meet some incredible readers who are also suffering from Lyme (and many amazing readers who are not suffering but came to hang and are the best!!), which only made me realize what an epidemic Lyme is even within my own readership community. It’s pretty nuts how widespread this disease is and is becoming even more-so.

One huge takeaway from the gala is that there are so many of us out there paying 100% out of pocket for our treatments… and these treatments are ridiculously expensive. On average most Lyme patients being treated by an LLMD are spending between $5k – $15k a month on their treatments. I fall in the range of about $10k a month, believe it or not, and it has not been fun. Want to know how much of that is covered by my insurance? ZERO. Zero dollars. And I have what would be considered “good” health insurance compared to many people I know.

I mean… are you freaking kidding me?

This is something that has got to change. That was one of the main points of Yolanda’s speech, not to mention that after one beautiful year in remission from Lyme she has relapsed and is suffering greatly again. 🙁 It gives me chills to even write that, especially after reading her book and knowing how deeply she has suffered.

There is hope. We all must band together to demand for change, and continue supporting organizations like GLA who raise awareness, funds, and spread education about Lyme far and wide. You can support them by heading to their website here & learning more about how you can contribute to the cause. They raised an astounding two million dollars at the gala this year, and it warms my heart to think about how much those dollars will help in ONE DAY ending the fight so much of us are battling with this disease right now.

NEW YORK, NY – OCTOBER 11: Yolanda Hadid attends the Global Lyme Alliance Fourth Annual New York City Gala on October 11, 2018 in New York City. (Photo by Dave Kotinsky/Getty Images for Global Lyme Alliance)

Okay now… 10 things you may not know about Lyme. You ready?

1. It is not called “Lyme’s Disease,” although I hear people call it that every single day. I have people coming up to me and messaging me saying “I have Lyme’s Disease, what should I do?” And it blows me away that even people who have been diagnosed are still calling it Lyme’s, so imagine the people who have not been diagnosed and know nothing about it! Even the doctor I wrote about in this post (worst experience of my life) called it Lyme’s, so it makes sense as to why so many patients are walking away from doctor’s visits thinking that is what it is called. Lyme is named after the town Old Lyme, Connecticut where the first case of Lyme disease was reported in 1975. For a disease that is so under-recognized and widely misunderstood, my personal opinion is that calling it by the correct name is a good start.

2. Each person’s experience with Lyme disease is very different, so it is not a one-size-fits-all symptoms list. Some sufferers are near death from Lyme disease, many cannot get out of bed, and others are pretty much fine & living their everyday life with the disease relatively unaffected. Which symptoms present themselves with Lyme disease has to do with so many factors, including a person’s immunity, genetics, lifestyle, coinfections, how long they’ve had it, and overall even their “luck” for lack of a better word. It drives me crazy when someone tells me, “Just try this one therapy or medication, you WILL HEAL because I did/my friend did/my mom did/etc.” I know these words come from a well-meaning place, but Lyme disease is not the same for each sufferer, so treatment protocols are also not the same for each sufferer.

For instance, my symptoms range from full body rashes, to chronic (debilitating) fatigue, to severe brain fog, to terrible migraines, to muscle/joint pain, to lack of focus/motivation, to horrible insomnia, to extremely high histamine levels/inflammation, to anxiety & depression because of how much the disease affects my life on a daily basis. And I am sure I am forgetting some, and not even attributing some of what I deal with to Lyme. Another sufferer may have NONE of these symptoms, all of them and more, or an entirely different set of symptoms.

So if you hear of someone who has Lyme and assume you know what their experience must be like, that is not the case. The best thing to do is to listen to each individual person, support and respect THEIR experience, and honestly… believe them. Those of us with Lyme have had issues with not being believed for YEARS and that has got to change.

3. As mentioned earlier in this post, Lyme treatments are not covered by insurance and they become ridiculously expensive. The only Lyme treatment that is covered by insurance is a 2-week round of doxycycline (antibiotics), which really only seems to “cure” Lyme symptoms if a tick bite is detected pretty much immediately. Even in that case, antibiotics are not considered a cure for Lyme. For anyone who is suffering longterm from Lyme, alternative (and western) treatments from herbs, to ozone therapy, to IV antibiotics, to stem cells, to hyperbaric chambers and infrared saunas and bee venom therapy and medication after medication and SO MUCH more are needed. Not to mention visits/appointments/testing with specialists. They all add up. On average people spend thousands to tens of thousands per month on their Lyme treatments. Sometimes those treatments are needed for years, and many times people still don’t see improvement after all of it. People sell their homes, go bankrupt, and lose their lives because of the financial devastation Lyme leaves them in.

In my personal experience, I have continued to work my butt off full-time as a blogger to pay for my treatments while my soul knows that I am extremely sick and for my healing I should not be working right now. It’s an incredibly difficult thing to reconcile. I would be fine for a while financially if I stopped working, but my lifestyle would change. And that sucks. I really don’t find it fair that after years of incredibly hard work, I have to choose between paying for my Lyme treatments and continuing to work while devastatingly ill… or cutting back on treatments in order to stop working.

It is a nightmare and I am one of the lucky ones who is even able to afford alternative treatments, and I still have not seen much improvement, but I imagine they are working because I have been herxing like crazy since June.

Here I am all dressed up, looking normal & healthy, feeling so sick and tired and migrainey I could pass out.

4. It gets worse before it gets better. The “herx” reaction is so real. A herxheimer reaction is when a patient feels sick and feels a flareup of what seems/feels like Lyme symptoms while taking medication for Lyme and coinfections. It occurs as bacteria or yeast die during antibiotic or herbal treatment, and can make you completely bedridden depending on your experience. I have felt significantly sicker since beginning my Lyme treatment protocol than I did beforehand, simply because I have been herxing so badly. At least it helps you know that your treatments are killing bacteria… even though it is painful while it is happening.

5. Hearing things like, “You look great! I am so glad you’re feeling so much better!” really suck to hear, even though the words are well-meaning. I have spoken to many Lyme sufferers about this, so I am pretty confident in saying it’s not just me who feels this way. Of course it’s nice to hear someone tell me that I look great. But the truth is, I don’t feel great. So hearing someone say, “You must be feeling so much better because you’re out and about and you look so good” just makes me feel misunderstood and want to crawl back into bed so my whereabouts can “match” my insides. It makes all of us who are suffering feel very misunderstood and alone.

Yes, I am a bad ass. And because I am a bad ass and a hard worker and a hustler and I care about the people in my life and I care about my business, I drag my butt out of bed most days, put some clothes on, and go out into the world. I look NORMAL. That does not mean that I feel normal. It actually means that I probably stayed up half of the night sobbing, feeling ill and in pain, disrupting my fiancé’s sleep while he rubs my neck as I lay hunched over trying to find a position that does not feel excruciating, guzzling pain remedies and begging my mom to drive back to LA to help me get through my life.

I can still wake up and get shit done, but I feel like a zombie walking through life. I am on the verge of tears about 75% of the time. If you ask me how I’m doing, I will probably crumble into a puddle on the floor. And I will be so fucking grateful. Be that person…. be the person who asks how someone is really doing rather than assuming all is fine. (And that goes for all people in your life, not just Lyme sufferers.)

6. Because the disease is often not visible on the outside, we get treated like completely healthy people with expectations from others to show up as our healthy selves would. This is really just an extension of number 5 so I won’t go into too much detail here, but I do feel like life is passing me by most of the time and I am sitting on the sidelines. I do feel contempt from some people in my life (clearly not the closest people to me) about me not “showing up” fully the way I used to be able to when I was healthy. But if I have learned one thing from this disease… it’s that drowning out the thoughts of others that are not in alignment with my truth is GOLDEN / life changing. Needed. Necessary. Everything.

7. The standard testing that is recognized by the CDC only picks up on about 50% of Lyme cases, leaving many thousands of people undiagnosed and with incorrect information about their health. At the GLA NYC Gala they shared that due to their research, THIS WILL BE CHANGING. HALLELUJAH !!! Head to their site to learn more about this, as my Lyme brain only understood the very basics of this. But I sure as hell know that this is a very, very, very promising thing.

Ava and me ont he gold carpet. 😉 Two warriors getting all dressed up for a night out followed by many nights recovering afterward. <3

8. You cannot only contract Lyme in Connecticut, the Hamptons, or Massachusetts. FACE PALMMMM. The same doctor who called Lyme “Lyme’s” to me also told me I couldn’t have contracted Lyme if I didn’t live on the east coast. Newsflash to him… I did live on the east coast for a long while. But even if I didn’t, that doesn’t matter. People have gotten Lyme in all 50 states and something like 80 countries. This is a GLOBAL epidemic, and just because the first case was reported in Old Lyme, Connecticut does not mean that that is the only place the deer ticks who carry Lyme exist.

9. Lyme disease is not only carried by ticks. There are studies that show that Lyme is also carried by fleas, misquitoes, and horse flies to name a few. Not to mention the animals that are bitten by ticks/fleas/any disease-carrying bug… like dogs, cats, and even rats. (Hopefully you’re not getting bitten by rats for many reasons but you know what I mean.) Something in my heart tells me that my Lyme disease was dormant for many years and then flared up terribly after a flea infestation in my apartment last year — the same time that my health began to crumble.

10. There are studies that show that Lyme can be transferred in utero. Meaning, if you get pregnant while you have active Lyme in your body, it can be passed onto your baby. This is still controversial and disputed but I know of enough people who this has happened to that I believe it.

OH AND LASTLY (because I can never stick to just 10)… you do NOT have to get a the classic bull’s eye rash in order to have Lyme. Less than 30% of people get that rash, and I am not one of them. Nor is hardly anyone I know with Lyme.

ALSO ALSO… many doctors do not believe that chronic Lyme disease exists, which is also something GLA is working to change. Thank god for those of us who have it…

Okay, there you have it my loves. I know this was a long one. And at times even an angry, very to-the-point one… it’s because this disease & epidemic fills me with rage and all sorts of emotions and feelings. It also fills me with hope. Hope for a change. Hope for my own health again (I KNOW I will get my health back). Hope for all Lyme sufferers to get better and be healthier than where we began.

Definitely check out GLA & support them and their mission. Would love to hear your Lyme stories/questions below. xxx

Me & my incredibly supportive other half at the gala.